New here and looking for guidance

Hi y’all, I’m Kaye and I’m new here. I haven’t been officially diagnosed yet, however I was lead here by another support group who said my symptoms sounded a lot like ES. This all started back in early November of 2023. I have very bad neck and occipital pain that wraps up right behind my left eye. I have intermittent tinnitus and fullness in my left ear and an increased number of floaters and occasional visual snow. My upper back and neck muscles are constantly rock hard and tight.

I’ve seen a spine doctor, two neurologists, and two neurosurgeons. I’ve had a CTA head and neck, and the report says my arteries are fine, MRA/MRV head (which showed Venous sinuses are patent without evidence of thrombosis. Right
transverse and sigmoid sinus is diminutive. There is signal loss in
the visualized upper internal jugular vein 3-D MIP images were
performed to better evaluate the vascular anatomy and confirm the
above described vascular findings.)

The radiologist noted I should have a CTV, my doctor ordered one and now I’m stuck. Every imaging facility I contact states they can’t perform a CTV. I’m at a complete loss. I am in excruciating pain everyday and I’m exhausted. My quality of life has plummeted and I’m afraid I will never be okay again.

My neurologist thinks it’s occipital neuralgia, my insurance doesn’t cover nerve blocks so I’m trying to save up for that.

When covid started I was very anxious and I started cracking my neck and continued to do so many times a day for 3 years (I have OCD, GAD and panic disorder.) My anxiety is much more under control at this time and I’ve since stopped cracking my neck and don’t intend to start again. I just have constant pain and headaches everyday now. I thought I may have caused CCI or AAI but I don’t have any neurological issues that I’m aware of. I dont have hEDS either.

I am located in Florida, any information on where I can get a CTV or a specialist in or closest to Florida who may be able to diagnose ES would be so helpful. Thank you all in advance.

There are some experienced ES doctors in FL, so here’s the up to date list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Maybe you could make some enquiries with some of them to see if they do a CTV?
We have had a few discussions about CTV; sometimes this term is used to refer to a straightforward CT with contrast where the patient is scanned as the contrast goes through the veins, so any obstruction can be seen; it’s quite routine so shouldn’t be a problem finding somewhere to do this. Or CTV is sometimes used/ confused instead of the term Cerebral Angiography/Venography to mean a more invasive procedure where a catheter is inserted through the veins into the neck to scan in more detail, but also carries more risk and so is less commonly done. Do you know what exactly was suggested? A CT with contrast can show the styloids clearly, also the CTA that you had done should show them, but not the effect on the jugular veins. (You could get an idea if the styloids are elongated and possibly causing symptoms from this, if you could get a copy of the imaging you could have a look at that yourself & compare it to images on here?) If you were to want to pursue the more invasive Cerebral Venography I don’t know for sure, but I would imagine you might have to travel a bit further…
(Some members have also been diagnosed through Caring Medical in FL; they don’t do CTs with contrast so I don’t think could diagnose vascular ES, but do a cone beam CT which would show the styloids. The prolotherapy treatment that Caring Medical do doesn’t very often help with ES, so I wouldn’t suggest doing that, but if it makes it easier to get diagnosed it’s a thought…)
Hopefully some of our members in FL can give you advice about specific doctors & where’s best to get a scan.

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Thank you for your response and the helpful information. I don’t have a computer at this time, so I have no way to upload my scans unfortunately to investigate on my own. I am aware of caring medical, as I came across them early in my journey of googling my symptoms and saw some scary reviews. I will take a look at the page you posted with doctor information, I appreciate you!

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We don’t recommend caring medical as such, but members have found them helpful to get a diagnosis…hopefully one of the doctors on the list will be able to help you! :hugs:

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@KittyKaye1214 - Welcome to our forum! In case you didn’t know, there are 7 of our 12 cranial nerves that can be irritated by elongated styloids &/or calcified stylohyoid ligaments. Based on the symptoms you’ve mentioned, it sounds like you may have an irritated trigeminal nerve & spinal accessory nerve. The trigeminal nerve could be causing the occipital pain & eye pain. The accessory nerve could be to blame for your upper back & neck muscle tightness/pain (if you have pain). Visual snow, tinnitus & the sensation of ear fullness can be attributed to internal jugular vein compression which is a possibility in your case because your MRA/V noted:

I had an MRV & CTA which was how my IJV compression was seen & interestingly, it was the CTA that showed the left side while the MRV showed the right side. @Jules has given you a good explanation of what the radiologist may have meant by a CTV

Based on this information which you provided, it seems the radiologist who interpreted your scan images was only looking at the vascular information. You could have elongated styloids &/or calcified stylohyoid ligaments, but since that wasn’t the focus of the imaging, it wasn’t noted. There are a lot of doctors who aren’t familiar with ES so even when there is obvious styloid elongation/ligament calcification in a scan, it’s sometimes overlooked due to ignorance on the doctor or ragiologist’s part or because their focus is on other aspects of the scan.

The doctors on our list for FL have been somewhat inconsistent in helping our members in your state. I recommend you request copies of your scans on CD from the radiology lab(s) where they were done so you have them in hand. There are several doctors on our Doctors List who do telehealth consults so you could get an opinion from one of them without having to travel. There is a charge for the consult but insurance companies will often pay at least some part of the cost for these. The doctors I recommend are Dr. Cognetti in Philadelphia, PA, Dr. Samji in San Jose, CA, & Dr. Osborne, in Los Angeles, CA. If there’s a possibility you have IJV compression, Dr. Costantino in White Plains, NY, deals with vascular ES & will do telehealth appts as well.

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Thank you so much for all of the excellent information. I finally found a facility to do my CTV this morning! I am scheduled for 05.28.2024. I will keep you posted if I find anything out. I am so afraid, my partner and I are very active and this is really affecting my quality of life. Do you have any suggestions on how to deal with the pain in the meantime or what to ask my doctors? I am looking into pain managment in the meantime. Thank you!

Options for helping reduce pain are icing your neck - 15-20 on & at least 40-45 min. off. Gel ice packs work well because they easily conform to the shape of the neck. Use a thin towel or cloth between your skin & the ice pack even if the ice pack is covered. Getting an Rx for a nerve pain medication can be helpful. The ones mentioned most often here are gabapentin, amitriptyline, & carbamazepine. Nerve pain meds are anti-seizure or anti-depressant medications. They can take a couple of weeks to start working plus, doctors usually start patients on lower dosage to help reduce side effects. As I understand it, the main side effects are drowsiness & feeling tired so taking them at night can help with sleep. A muscle relaxant such as Flexeril has also been helpful for some of our members so that would be an option, too, but I don’t think you can take both a nerve pain med & muscle relaxant. Not sure though so worth asking your doctor about that.

If you do have IJV compression, sleeping with your head elevated at night can help reduce symptoms from that.

Here’s a good post that @Jules wrote that may help you identify other symptoms that can be related to ES:

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I really appreciate y’all! Do you have classic ES or the vascular variety?

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I was treated for regular ES but developed vascular symptoms after a cycling accident w/ a head injury just before my second ES surgery. I didn’t recognize the symptoms until several years after my second surgery. I’m pursuing treatment for that now. I’m 10 yrs out from my first ES surgery & 9 yrs out from my second one.

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Im sorry you’re going through that? Will you have another surgery?

I have a follow-up appt on 6/4 & hope to get an opinion as to whether surgery might be helpful. I have huge collateral veins that are compensating for the IJV lack. My worst symptom is that I’ve become almost completely deaf in my left ear, & there is some minimal research that shows that can be caused by IJV compression. I have a little hope that decompression surgery might restore some of my hearing, but if not, my right ear still works, & I am thankful for that. :innocent:

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I am sending you all the healing energy! I really appreciate you taking the time to answer all my questions and for being so kind and thoughtful. I hope if you do have to have another surgery it helps restore your hearing.

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@KittyKaye1214, It sounds like you found a place already but I just wanted to put out there that I had my CTV at radiology regional in Fort Meyers, Florida.

@Isaiah_40_31 who are you having your follow-up with on 6/4? Also, wanted to put out there that Dr. Nakaji told me has been doing quite a few revisions these days in case you want to put him on your list of possibilities. I really hope it goes well for you, you are such a rock for this community.

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@Chrickychricky - I’m seeing Dr. Hepworth. Had my first appointment with him end of Feb. I will certainly keep Dr. Nakaji in mind though with the symptoms reduction that my collateral veins have given, I’m not sure he would be interested in my case. Thankfully, Dr. Hepworth hasn’t been dismissive so far.

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@Isaiah_40_31 So nice to hear that he hasn’t been dismissive. I hope he is able to help you with your hearing.

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Thank you for your care & concern, @Chrickychricky.

:hugs: :heart:

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